|
April 2008 - Posts
-
|
Well, I'm here.
The flight was great. I really do love Midwest Express. I hope nothing happens to them with all the rises in gas prices etc. It is so nice to fly and not feel like you've been wedged into your seat like freight.
Hector met me at the airport. I enjoy riding to NIH with Hector the cab driver because he's such a great source of information about what's going on in HPSland. He gives me the down low on how NIH is going over with the crowd from Puerto Rico, whether there are any moral issues that might need attention etc.
I arrived in time to actually order a real dinner. That almost never happens. Usually I get here after the last call for dinner and I get a very dry turkey sandwich that tastes something like cardboard.
Dr. Markello was here when I arrived which is always a big treat. He really should have been a professor. I really do enjoy just picking his brain about what's going on with the research. Every time I learn something I didn't know before. Every time I spend time with him I understand the whole picture just a bit more clearly than I did. So, for me, that's a big treat.
I am getting nervous about tomorrow. Tomorrow I have my pulmonary function tests first thing. I have noticed that my breathing hasn't quite been as perfect as it has been. I am getting a little out of breath more easily, but I've been chalking it up to allergy season. Tomorrow, even if I know it's likely allergies, I'll still be worried if my numbers are down. It's just the way it is.
Dr. Markello told me they're adding a new kind of pulmonary function test, so I'll tell you what that was like afterwards.
But, perhaps what I'm even more worried about is the IUD.
Yes, I finally bit the bullet and am going for the IUD. Women with HPS can have very bad periods, and as I've gotten older my periods are getting worse and worse. It isn't just the bleeding. The craps are worse. It seems to aggrivate my digestive issues etc. It's seems as if I spend half the month recovering from my period and for at least a week out of the month I feel like I've got a horrible flu.
So, it's time for that little monthly friend to bid farewell.
I've tried several different types of birth control pills to control things - but I've had a bad reaction to the pils every time.
So, this is the next step.
The problem is that I'm so nervous about having it put in. Tomorrow I have to have a vaginal ultrasound. Oh boy, that sounds just plain kinky. I'm a shy kind of girl and that has me all worked up too.
So, tomorrow could be a long day.
And tomorrow night Dr. Markello is going to try to do a sleep study on me. I am looking forward to that since I've been so, so tired!
I think poor Lisa wants to go to bed, so that's all for now. Stay tuned!
|
-
-
|
I haven’t blogged in the last few days. A LOT has been going on. It was a hellish week at work and I’ve been trying to get ready to go to the NIH.
I was very bummed that I didn’t get to blog about the Genetic Information Non Discrimination Act the day it actually passed the Senate. What an achievement! It’s been more than a decade in the making.
We’re not 100 percent there yet, but it was a major milestone.
The House version of the bill is slightly different than the Senate’s version, so they’ll have to have a committee to work out some of those details, and then it’s on to George W.’s desk. Even then, technically I doubt that will be the end.
I was involved in the passing of Braille literacy legislation back in the 1990s. What I learned from observing that develop is that getting the actual needed law passed is only the first step.
Once GINA passes we’ll have the tool we need.
The next step will be to see how the government implements that tool. What regulations get written to implement the law? In the case of the Braille literacy bill, the regulations threatened to untangle everything that had been achieved by the law. So, I hope that we that have backed the bill don’t think our work is done the minute George’s pen makes its way across the page.
The next step will be the courts. The law has to be used to really prove its muster. In the case of the Americans With Disabilities Act the courts really defined the boundaries of the law.
Don’t get me wrong. If I’d been able to, I would have been celebrating big time – but we’ll likely have to defend these newfound legal protections. Maybe I'll get to celebrate next week while at NIH.
|
-
Congradulations and thank you to the Tillmans! Some of you that were at conference will remember that the Tillmans were asking a number of questions and taking some video. We intend to use some of the video they shot on the HPS Web site eventually - but while we were at it the Tillmans shot some video to be used in a contest being held by http://www.goodsearch.com/. The contest was to create a video about the cause you goodsearch for - and the Tillmans took on the challenge! The HPS Network will get a $100 donation from Goodsearch and the Tillman video will be featured on their Website tomorrow, I think. And just in case you don't know - (how could that be since I shout it from the rooftops) if you search the Web at http://www.goodsearch.com/ and choose the HPS Network as your charity, we get a penny per search. Those pennies add up! So, keep goodsearching! And if you want to see the video (if you missed it the first time) here's the link: http://www.youtube.com/watch?v=2bohiCR4s6o
|
-
Last night Univision ran the following story about albinism and HPS. It ran nationally. I don't speak Spanish so I can't give you a commentary - I'm just grateful for some coverage. Still, I am a bit disappointed that no contact information was given. When we did have an article run recently with a phone number to call at the end, we had eight new folks turn up. Imagine with national coverage how many we might have found. It's a shame. Hopefully there's someone out there that will google it. But, here's the link: http://video.google.com/videoplay?docid=-8317676877660950227&hl=en
|
-
Here's this morning's update from the Coalition for Genetic Fairness. Dear friends,We can hardly believe it, but GINA is at the brink of coming to the floor.It appears there is a deal, that the hold has been dropped and almost all systems are go. I say almost, because as of last night there were still a few sign-offs to be had to allow the bill to go to the floor under unanimous consent – the Senate’s preferred way of doing business.The Senate convenes at 5PM EDT today, and there is a strong possibility that GINA will go to the floor. If not today, then tomorrow – we can hardly believe it.Our allies in the Senate have thanked us, and it is to all of you we pass on that thanks – your calls and faxes had an astounding effect – we are breathless with the force of your passion. Thank you so much!Check and see if your senator has co-sponsored (below) – never hurts to jump on – so call to thank them, or call to ask them to cosponsor!We will blast the vote out to all of you as soon as I happens!Best,SharonCo-sponsors:Sen Allard, Wayne  - 1/22/2007Sen Bayh, Evan [IN] - 4/16/2008Sen Bennett, Robert F. [UT] - 1/30/2008Sen Biden, Joseph R., Jr. [DE] - 1/22/2007Sen Bingaman, Jeff [NM] - 1/22/2007Sen Boxer, Barbara [CA] - 4/21/2008Sen Brown, Sherrod [OH] - 1/22/2007Sen Cantwell, Maria [WA] - 1/25/2007Sen Cardin, Benjamin L. [MD] - 1/22/2007Sen Casey, Robert P., Jr. [PA] - 9/28/2007Sen Clinton, Hillary Rodham [NY] - 1/22/2007Sen Collins, Susan M. [ME] - 1/22/2007Sen Dodd, Christopher J. [CT] - 1/22/2007Sen Dorgan, Byron L. [ND] - 4/16/2008Sen Durbin, Richard [IL] - 6/20/2007Sen Enzi, Michael B. [WY] - 1/22/2007Sen Feinstein, Dianne [CA] - 4/22/2008Sen Gregg, Judd [NH] - 1/22/2007Sen Hagel, Chuck [NE] - 3/8/2007Sen Harkin, Tom [IA] - 1/22/2007Sen Hatch, Orrin G. [UT] - 1/22/2007Sen Inouye, Daniel K. [HI] - 4/25/2007Sen Johnson, Tim [SD] - 7/30/2007Sen Kennedy, Edward M. [MA] - 1/22/2007Sen Kerry, John F. [MA] - 4/16/2008Sen Lautenberg, Frank R. [NJ] - 1/22/2007Sen Leahy, Patrick J. [VT] - 1/24/2007Sen Levin, Carl [MI] - 10/19/2007Sen Lieberman, Joseph I. [CT] - 4/25/2007Sen Menendez, Robert [NJ] - 3/20/2007Sen Mikulski, Barbara A. [MD] - 1/22/2007Sen Murkowski, Lisa [AK] - 1/22/2007Sen Murray, Patty [WA] - 1/22/2007Sen Nelson, Bill [FL] - 1/22/2007Sen Obama, Barack [IL] - 1/22/2007Sen Pryor, Mark L. [AR] - 4/11/2007Sen Reed, Jack [RI] - 1/22/2007Sen Salazar, Ken - 1/22/2007Sen Sanders, Bernard [VT] - 1/22/2007Sen Schumer, Charles E. [NY] - 4/15/2008Sen Specter, Arlen [PA] - 3/20/2007Sen Stabenow, Debbie [MI] - 4/25/2007Sen Tester, Jon [MT] - 3/11/2008Sen Warner, John [VA] - 1/29/2007Sen Whitehouse, Sheldon [RI] - 4/15/2008
|
-
I saw the following article in the New York Times yesterday. It’s about how the new governor of New York, Gov. Paterson, is adjusting as a legally blind person to his new job. It’s also about how Albany is adjusting to him.
It really made me stop and think. I want to start out by saying that my comments are directed more toward the system in general than to the Governor. I have no bone to pick with him and I don’t mean to be critical of him. If I lived in New York, maybe that would be different – grin.
It disturbs me that a lot is made of the fact that the governor doesn’t use Braille or a cane as though this is some sort of badge of honor. I really don’t know the governor well enough to know if this is his own attitude about these things, or the sighted media’s interpretation.
To me, we as legally blind people have the right to choose the tools and techniques that work best for us. But too often those of us with low vision are only given access to half the tools. It is assumed that because we have a fair amount of usable vision, that we don’t need things like Braille. This is the system, and the attitude, that the governor and I both grew up in.
But as I read about how much time it is taking the governor to listen to all his messages and all the effort it is taking his staff to record everything, I can’t help but think how much more efficient the process would be if he was a Braille reader and could use a small device, such as a Braille lite for example, with a refreshable Braille display. Then he would be able to read anything anyone sent him with no eye fatigue – and if he’d learned Braille either very well, or very young, at a speed the same as, or even faster than, sighted peers.
I am not a Braille reader, but I wish I were. I wish I’d had the opportunity as a child so that I could have made a real choice as an adult. (I do read some Braille, but not well.)
The governor seems to be adjusting. He seems to be getting along okay. And yes, I get along okay too without Braille. But, the reality is there are tasks that I could do better if I knew Braille.
In school I was always a good student. I always got by, no matter how little support I got from the school system. And because I did well, that was used against me to justify why I didn’t need more services. Just because I can read print doesn’t mean I couldn’t benefit from Braille. Just because I had a great GPA didn’t mean that I might have gotten the same result with less eye strain, fewer headaches, and maybe a more balanced life if I’d had more blindness skills.
Just because something is “good enough” doesn’t mean that it can’t be done “better.” Don’t we as low vision people deserve the best of both worlds?
There are some who really don’t want these options, and that’s their business. But what’s the old saying, don’t knock it until you’ve tried it. In so many ways my totally blind friends have a leg up on me.
April 21, 2008
A Blind Governor Adjusts, and So Does Albany
By JEREMY W. PETERSALBANY — It is a phone number that just a handful of the governor’s senior aides know.
At the end of each day they call in and record briefings, laying out what he needs to know about the following day. They recite his schedule, read talking points and explain the intricacies of issues likely to come up. They read memos from staff members and relate biographical details about the people he is likely to meet.Lots of governors rely on thick briefing books and helpful e-mail notes from their staffs. New York’s governor, David A. Paterson, who is legally blind, has his ears and what his aides call his Batphone.Usually at night, in the Executive Mansion or at his family’s home in Harlem, the governor listens to the recordings on the designated phone line. They run up to five minutes each and can pile up quickly, taking hours to absorb.“Last night I had 43 messages, all of them five minutes in length,” Mr. Paterson said in an interview. “That would be 215 minutes worth of material — over three hours.” He stayed up that night from 11 p.m. to 1 a.m. listening to the recordings, which covered everything from his prepared remarks for a press conference on energy to articles on economic growth in The Economist. But that was only enough time to get through half of them.
To the general public, the transition to a governor who is legally blind has been almost imperceptible because Mr. Paterson, 53, acts in many ways like a person with 20-20 vision.
He does not walk with a cane or read Braille. He threw out the first pitch at a Mets game at Shea Stadium last week. And when he is in the Capitol’s familiar stone and marble corridors, where he has worked for two decades, he walks at a brisk pace, slowing down only when an aide alerts him to someone approaching. But behind the scenes, Albany is a different place since Mr. Paterson was sworn in last month. With a blind man in charge — the governor can see nothing out of his left eye and only color and large objects out of his right — everything from speech preparation to the instructions for the staff at the governor’s mansion has been custom-fitted to Mr. Paterson’s needs.“Now that he’s governor, it’s a whole new ball game,” said Assemblyman Keith L. T. Wright of Harlem, who has known Mr. Paterson since they were boys.Since he cannot read from a prompter, the governor tries to commit his speeches to memory, by listening several times to an aide’s recording of the speech. Delivering an address just from memory can be nerve-racking.“It’s like a high wire,” he said. “You trip, there’s no net.”He travels with a phalanx of assistants, typically a half-dozen, including aides and bodyguards, who act as a buffer zone around him in large public settings, from hotel ballrooms to school classrooms. The bodyguards gently steer him, often with a hand on his back or arm, toward an exit or into a waiting vehicle.At news conferences in the Capitol’s ceremonial Red Room, it is not the governor but his press secretary, standing just to the side of the lectern, who calls on reporters, reminding them to state their names and affiliations before asking a question.Glad-handing a crowd poses a challenge for Mr. Paterson because he cannot fully make out people as they approach him. So when his aides spot someone they recognize coming toward him, they tell him who it is. He instructs the aides not to whisper, but to speak in their normal tone of voice, because he wants the exchanges to appear as ordinary as possible.Mr. Paterson, a Harlem Democrat who has been blind since infancy, has been making adjustments to his surroundings throughout his life. But, with the added demands of the job of governor and the relentlessness of his new schedule, staying on top of his work now takes a lot more time. He said much of his day can feel like a big game of catch-up. “I’m always trying to get back that time that I’m losing,” he said.Given the volume of material he must take in, he tries to find ways to do things faster. He listens to very long articles or books on a special tape recorder for the blind that plays at speeds so fast, it is difficult for others to comprehend. “You get used to listening to that Alvin and the Chipmunks voice,” he said.At the Executive Mansion, staff members have been trying to keep up with the needs of their new boss. They were instructed shortly after he moved in last month to watch the level of his drink during receptions and offer him a refill if it looked too low. He was still learning the layout of the house and could not find the bar easily.Mr. Paterson has told the staff not to move any of the furniture in the 40-plus-room home on his account, and has said that he will learn where everything is. He is used to adapting, in big and small ways. When he wants more salt on his food, he takes the shaker and sprinkles its contents into his hand first so he can feel whether he actually has the salt, and not the pepper, which is less chunky to the touch. When he jogs through his former neighborhood in Guilderland, near Albany, he runs the same route each time. He purposely avoids Route 146 because of the gullies that run along the side of the road.“The secret is how to adjust,” he said. “I ask myself how am I going to fit into this world, and how am I going to do it without killing myself.” As a baby, he suffered from a condition known as optic atrophy, which damages the optic nerve. His parents decided not to send him to school in New York City, where teachers could not promise that he would be able to interact with students who were not blind. So they sent him to school on Long Island, where he received special attention but also learned with students who were not disabled.The minimal sight in his right eye — in which his vision is 20/400 — affords him a limited ability to read. If he holds a book very close to his eye, he can make out the words. And he said he will occasionally write himself reminder notes. But reading is so straining that it tires him after only a few minutes.His reliance on his hearing has helped him sharpen a talent useful in politics: an ability to focus on people in a way that makes them feel that they were truly heard. His attentiveness to people’s voices has other political benefits, too.“He can pick up a phony faster than somebody who has sight,” said Assemblyman Wright.
He also uses humor to poke fun at his disability, offering anecdotes about how he once showed up at a press conference wearing two different-colored shoes, or how as a young man he would occasionally miscount the number of subway stops on his way home and get off at 145th Street instead of 135th Street. “Back in the ’80s, you didn’t want to go there at night,” he said, laughing.
Although Mr. Paterson often says he does not want people to go out of their way for him, he says society should recognize that he and other blind people cannot do everything on their own.
As one of his first acts as governor, he added instructions to his official state Web site on how to enlarge the type on the screen.“It’s just being more sensitive to people who feel that government and institutions ignore them,” he said.
|
-
Here's the latest update on GINA from the Coalition for Genetic Fairness. Keep up the pressure! Dear all,We heard this morning from the Senate and House, Democrats and Republicans, that there is agreement on GINA across the board and it ready to be advanced, with the hope that it will be under unanimous consent – all systems look good for this week.It is absolutely essential that we all keep the heat up high – please continue to storm the Senate with calls and faxes – tap your networks and tell them to pour it on –go to other networks and get their support. We need you all more than ever. The message is simple: VOTE FOR GINA!!! You can find details of the campaign here: http://www.geneticfairness.org/action_alert6.htmlThank you for this monumental step in transforming healthcare – we will be part of liberating the amazing potential of the genome for the benefit of all.Onward!
|
-
|
I need a sabbatical.
I feel like whining.
I’m tired
Friday it was a battle all day to be able to work because all I wanted to do was fall asleep. I took the early bus home and was in bed by 5:00 pm. I woke up about 10:00 pm or so briefly, but went back to bed and didn’t wake up again until noon.
The rest of Saturday it was as though my limbs had cement in them. I just couldn’t stay awake. I fell asleep folding laundry.
Sunday I felt better. But, as always happens when I go from so tired to feeling normal, it feels as though I’ve got to get everything done right then. I did three loads of laundry. I cleaned out my fridge. I walked a mile to the grocery, bought groceries, and then walked a mile home. I cleaned out half a closet. And, I shampooed half of the carpet in my bedroom.
Today at work I was dragging. I just feel so tired.
|
-
Passing this along from the HPS Parent's listserv.Gente:Tengo entendido que mañana el canal 41 de Nueva York (Univision); estarán trasnmitiendo un reportaje especial de "HPS Network" ; el programa se trasmite de 10:00 pm a 11:00 pm y se titula : Aquí y Ahora. Trataremos de publicarlo por la red.Saludos;Edgardo MercadoFor English version please scroll down
People: I think that tomorrow the Channel 41 in New York (Univision), goes to broadcast a special report of HPS Network, the program begins at 10:00 pm to 11:00 pm, and the name is: "AQUI Y AHORA". We go to try to post it in the network.
SaludosEdgardo Mercado Para versión en español mueva el mouse hacia arriba.
|
-
|
Regular blog readers have heard me mention Janet, an HPS’er who is currently seeking a lung transplant. Lung transplant surgery is very, very expensive and there are a number of expenses that don’t get covered by insurance. It’s often necessary, for example, to temporarily relocate to be near the center before or after the surgery.
While there is a lung transplant program in Chicago closer to home, it was not on Janet’s insurance plan, thus she’s had to be listed in Wisconsin.
Janet’s friends and family are holding a fundraiser to help Janet and her family with the expenses that won’t be covered by insurance. They’re having an auction this coming Tuesday night, at 8:00 pm, at CoCo’s, 2723 W. Division in Chicago.
Her friends and family have managed to secure all sorts of cool stuff to be auctioned off such as White Sox tickets, a computer, meals at local restaurants, bottles of wine and various baskets of goodies. There will also be live entertainment from several comedians.
Janet’s family would really appreciate any show of support from those in the Chicago area.
|
-
-
On Sunday morning at conference we had a short session that was a panel of four of us telling stories about being legally blind, and what we'd learned from a given experience. This is Carmen C.'s story. It's just too funny! Unfortunately, I can't post the video directly, STILL - not sure if the problem is with YouTube or Blogger? But, if you want a laugh, click through to see it. (Thanks Tommy!) http://www.youtube. com/watch? v=RPxlk3Ws49Q
|
-
Here's an update on the status of the Genetic Non-Discrimination Act. It actually didn't go for a vote this last week, so if you didn't get around to writing to your member of Congress, it isn't too late. Knock yourself out! Grin! I'm not including the list of supporting organizations. It's interesting, but very long. I can assure you, the Hermansky-Pudlak Syndrome Network's name is on it. Thanks everyone! Dear all,Our colleagues on the Hill tell us that it appears all systems are go for GINA this week – last week, the transportation bill took longer than expected. It might be that the bill on the floor ahead of GINA on Monday will also take a while, but the hope is that GINA can fly once it does hit the floor (probably Tuesday or later, my personal guess – one cannot time the progression of bills accurately).Staffers tell us that your calls and faxes have made the difference – cosponsors are being added every few days (check to see if your senator is a cosponsor - http://thomas.loc.gov/cgi-bin/bdquery/z?d110:SN00358:@@@P), and all Senators are hearing that this issue is a major one for their constituents – we have to keep this level of interest up until passage – so please reach out even further to all of your networks.If your organization is not in the list below, please send your organization’s name to: policy@geneticalliance.org it is time we all stood together – this is a winning team. We welcome nonmedical, non-health organizations as well.Below the list of organizations, you will also find the instructions for taking action and getting your friends, relatives and colleagues to take action.This is extraordinary, my friends, after more than a decade of work, we are about to see the incredible dedication of thousands of people bear fruit. I am awed at your commitment, one and all!Thanks so much!Sharon (for the steering committee of the Coalition for Genetic Fairness)
|
-
 Let's give a big shout out to the Springfield Falcons Hockey Team in Mass. They held two HPS Awareness Nights (and gave HPS a portion of ticket sales) - one in March and one in April. Pictured here are Sara, her little girl Christina, Ashley and Carmen being presented with a check at the second hockey game. They got to walk out on the ice on a red carpet! Thank you Falcons!
|
More Posts Next page »
|
|
|